Faces of Autism

0:00Through 25 seasons, 4 ,561 episodes, I believe The Oprah Winfrey Show is one of the greatest classrooms in the world. I really never thought of it that way. The aha moments, the breakthroughs, the connections, the occasional ugly cry. I miss him so terribly. I miss him every single minute. The LOLs. The moments that matter. The eye-opening life lessons. Never allow them to take you somewhere else. I'm bringing them back. It's time to open the vault. I've personally chosen these classic episodes to share with you again. Every single person you ever will meet shares that common desire. They want to know, do you see me?

0:47Do you hear me? Does what I say mean anything to you? You are listening to The Oprah Winfrey Show, the podcast.

0:59We've heard from thousands and thousands and thousands of you asking us to do this show. And what I'm hoping you come away with from this show is a sense of knowing, awareness, and also a sense of compassion for all the families who have to deal with this every day. It hits home for over a million families. As many as 1 in 150 children are affected, according to the Centers for Disease Control. That is 67 children diagnosed every single day in America, and a new case every 20 minutes in America. It's growing so quickly that the CDC is now calling it a national health threat. There is no known cause and no known cure.

1:46But if you are a family living with this, there is no mystery about how devastating autism can be. This is a national health crisis of our time. This is bigger than AIDS, this is bigger than breast cancer, and almost no attention seems to be paid to it. Nothing is simple with David. Everything is stressful, and everything is laborious and exhausting. Okay, you know what, I just don't think this is going to work. And I say, David, you know, I'm trying to get to him, and he's not there. He's not there. I don't know where he is, but he's not there. He is trying so hard to stay in himself, and I'm trying so hard to pull him out all the time.

2:38You're stressed that your kid's not eating broccoli? My kid's eating baby food for the last three years. Getting dressed is just agony. Putting on your socks, believe it or not, is about a 20-step process. This took me two years. Two years to put his shirt on? To put his shirt on. Two years. Danson goes through phases where he doesn't sleep for like two or three weeks straight. I mean, maybe from like seven to eight in the morning and you're up all night. It took us years and years to get him toilet tray and we thought we'd have that solved. And then to have that go backwards, that was one of the darkest days.

3:15I still hope I won't be changing diapers when he's six and a half. Those are scenes from an eye-opening documentary called Autism Every Day, produced by Autism Speaks. That is the nation's largest autism advocacy organization. Michelle, Jesse, and Katie are three of the parents who are featured in that really beautiful and informative film. So welcome to our show. Thank you so much for having us. Thank you so much.

3:46So at what point did you realize that your child was autistic? Well, he developed very normally. He walked, talked, did everything on time, was, you know, beautiful, loving little boy. And when he was about two, I noticed he was losing words. And I thought I was crazy. I thought I was doing something wrong. I kept thinking, maybe... What do you mean, losing words? He would...he had probably 1 ,000 words. I love you, Mommy. I want to watch Barney now. And then all of a sudden, he...he'd be looking at me blankly When I spoke to him, like, he didn't understand me anymore. Wow. And I took him to the pediatrician, and she was like, it's fine.

4:25It's because you just had a baby... He had a baby brother who was recently born. And I kept thinking, it's more than that. I know it's more than that. Felt that it was more than that. Yeah. And then we were told to wait. We were told to just, you know, watch it. And then, you know, I regret that so much. Because if I listened to my gut, yeah, I would have pursued it with a developmental pediatrician. This was so shocking when I watched that documentary, because I always thought that the children, in terms of their development, you wouldn't see them develop. And so you would know immediately, you know, like they're not sitting up...

4:57Sometimes. ...or they're not speaking. And what I've learned is, is that there's a whole spectrum... Yes. Yes. ...of the disorder. How did you know, Jesse? That was...that's the devastating part about this, Oprah, is that for us, Adam was developing normally. And it almost seems like you're robbed of your child, somewhere in the middle of development, where Adam...the telltale sign for us was, we were in this play place where there was this huge ball pit. There's Adam. Yeah, beautiful guy. And Adam was in the ball pit. And how old was he? How old? He was about 18 months at that time. Okay. And children were crashing around Adam, and he would just lay there.

5:31And Adam had such a beautiful smile, and the smile started to go away, and the twinkle in his eyes started to go away. And I just...we knew that there was something wrong, but we would go to the doctor, and he would say, you're a nervous parent, you're a new father, you don't know what you're talking about. But we knew, as a parent, we knew that there was something wrong. And it was just devastating, because I was losing my boy to a world that I didn't understand or could comprehend. Had you even heard of autism? The first time... I've heard of autism through the film Rain Man. That was my reference.

6:00Yeah. Yeah. So my instant reaction, I did not hear the word autism from a professional. I heard it from his godmother. I remember the day. It was his second birthday. And he was running back and forth. And his godmother said, I'd hate to think it, but do you think Adam may be autistic? And I said, Adam's not like Rain Man. That was my reference. I thought it was...it was...you know, that was awesome. I think for many people...that's why I wanted this show to first be about awareness and then understanding compassion, because I think for many people, that's their only reference to it. Right. Michelle.

6:27I thought, actually, that Danson was going deaf. That's what I thought was happening with him, because, like Katie said, he hit all of his milestones. He was interacting and just like a typically developing baby. And then he got ill. He had a respiratory infection, and he was hospitalized for a week. And it's like he came out and he never spoke again. And he'd be dancing, dancing, dancing. And he wouldn't turn around. So the first thing I did... And he was how old? He was two. Two. And I took him to get his hearing tested. And ironically, I'm an educator and was in a doctoral program in education at that time.

7:02And I never heard the word autism, which is just terrifying. Yeah. You never heard it. Were you told it was PDD or... That's how he was diagnosed. Yes. And... What does PDD mean? It's Pervasive Developmental Disorder. And I had no idea. I went home to stay up all night the next several nights on my computer, and every time I put in PDD, NOS, which is the rest, not otherwise specified, what in the world does that mean? Autism came up. And I was like, wow. Wow. Well, as Katie said, her son Christian seemed happy and typical until he was about two, as everyone here has said. So here's some home video of Christian and his baby brother before he was diagnosed.

7:46Hi, Dad. Hi, Dad. Who's that with? Who are you with? Hi, guys. Hi, guys. Hi, Dad. Yeah? Funny. Isn't that funny? Are you holding a baby? What do we say when the baby cries? Be careful, baby. Be careful, baby. We say, don't cry, baby. And how old is Christian now? So he was the older brother there. Yeah, that's hard to watch. Learning to speak, yes. Yes, he was the older brother. He was two. And as you can see, you look at that and you wouldn't think something's wrong. Absolutely. And it was very similar to what Michelle was saying. The sickness has started. He was sick all the time soon after that.

8:27And he lost his speech. And he was also toilet trained in that video and would operate the telephone, making, I don't know, crank calls, I don't know, but he would try. He would do, like, imitation, you know, try to, you know, and on the computer. And I'd say within three months of that video, it was all gone. Within three months? Yeah, all gone. Whoa. Yeah. And so for so long, were you trying to hold on to that? Yes. Were you trying to hold on? I'm sure all of you, you tried to hold on to what he used to be? Yes. Yeah. It's like, it's like, how do you mourn your own child, in a sense, in a sense that your child is still alive, but that part of him is gone.

9:04Mm-hmm. And you're constantly searching for that part of him that had. Yeah, and also gone where? Right. You just don't know. Right. It's just unbelievably frustrating and heartbreaking that you had him, and he's somewhere that you don't understand, and not too many people understand what to do to help to be able to take him out of it. And is it like your child disappeared? Because, yeah, you had him, he was there, you were seeing the personality form, and then he disappears where? One of the women on the tape said, I know he's in there, I just don't know where. Yeah. Yeah. We're talking to really courageous families who are living with autism and allowing us inside their lives today.

9:40And I'm hoping that it will make us all be more understanding and compassionate and just aware, because the CDC is now saying that this is a national health threat, because one out of 150 children, that's a lot of children, are...have autism. So on the tape, you're saying, I just wish I could get one word. Has...you know, you were saying that it was 18 months. I don't know. Do you speak at 18 months? Had he said Dada yet? He was saying dada. He had about four words. He was saying dada. And I often say that if I close my eyes on any given moment, I could remember what that sounded like. And I hang on to that, and I hang on to that memory.

10:17And since then, he has not...he hasn't spoken a word since. And I...but he relates to me in other ways. I mean, we're spiritually connected. And I don't give up hope. I know that one day he'll come back and he'll say dada to me. He says dada in different ways. He shows me different ways of connecting to me. but I often try to remember and try to hold on to what that sounded like. There was a point where I was actually looking through videotape, and I remember staying up late one night, scanning and going through videotapes and scanning for hours and saying, maybe we caught this word, maybe I could find my son in these tapes.

10:53And I just stopped. I just had to stop and had to realize that my son was right in front of me. Yeah. And that I had to do everything I could to help him. Yeah. Some autistic children show behavior that is erratic and repetitive and sometimes uncontrollable. And this behavior is called stimming. Stimming is short for self-stimulatory behavior. And, well, pretty much what he's doing right now is stimming. Whoo! Christian, Christian, quiet hands. He flaps his hands and sometimes claps them together. He spends most of his time jumping up and down on his toes. clapping his hands. Frankly, it does drive you crazy after hearing that for a couple of hours or weeks or months or years.

11:46He grinds his teeth, he makes this clicking sound. You just want to be like, shut up, shut up, I can't take it, it drives me crazy. And then couple that with feeling guilty because because that's the only sound he can make. Once in a while he just picks a phrase and it just keeps coming up. Hoding is the last one. He's into headbanging. He loves to bang his head against you. And sometimes it hurts. Adam, nice. Nice, alright? Nice. He'll scratch his neck and rub his eyes or he'll scratch his arms and sometimes shoulders. It's really painful to watch. Can you describe what Christian, how stimming affects him?

12:40He often has those hand gestures a lot. And what we try to do is redirect it towards more functional things. Like, he loves music. And my mom got him a synthesizer. And so he plays. Not well, but he plays. Mm-hmm. And we try to engage in a lot of physical activities. I think he does that to feel his body. I don't think he can feel his body like we can. And the teeth grinding, the same thing. And we try to give him ways to get that feedback without being just... Well, listening to your stories, I just think, you know, parenting, I believe, is the hardest job on earth. Mm-hmm. And if you're a single parent, God be with you.

13:19It's just the hardest thing on earth. And one of the parents on there saying... were saying that you have to constantly be in the moment of trying to create...be creative and stimulate... ...and try to find a way in all the time. It must be exhausting. So exhausting. Exhausting. Beyond belief. Yeah. It's basically draining, exhausting. You're constantly in watch mode. You're constantly watching. And if you're not watching, someone else has to watch and seeing what he's doing, trying to redirect him, trying to keep him connected in our world as opposed to the world he wants to drift off into. And I think sometimes it's kind of like a really destructive and bad relationship when you're just trying to get someone's attention all the time.

13:59Like, please love me. Please love me. That's how you feel. And it's very... It's... Sometimes you just feel so small. And you just... Just to get your child to look at you, you will do anything. Mm-hmm. Yeah. Mm-hmm. Well, according to an estimate in Newsweek, it could cost more than$3 million to care for an autistic person over the course of their lifetime. And for many families, the financial burden is... is not the only cost. Adam and I, it's like we lost part of our life in a sense. We gave up our house. We gave up a life that was comfortable, you know, to come back here and to live with my mother-in-law, because we had to.

14:40We had to make that choice for Adam. I love that house. And I remember walking out, and I just looked at that house for one last time. and it was almost like looking at my life that could have been. We set up the basement like a classroom for Jackson. I wanted to get used to being in a school environment. We had to borrow money from my parents. We had to borrow money from my sister. The$50 ,000 that we're in debt is all about the autism. One kid with autism is being diagnosed every 20 minutes. Every 20 minutes, a family is exploding in this country. They're going to go bankrupt, probably end up divorced.

15:20Having a child who needs what Danson needs made it really difficult for me to balance my life and be a mother and have a job and be a wife. I didn't give that marriage what I could have because I had nothing left to give. And so your marriage ended? Yes. Your first marriage ended? Yes, it did. But I think what's really important to say, it's one of many gifts that Danson has given me by making me be a better person and a more loving person. And my ex-husband and I are best friends. And it is our responsibility, I believe, as Danson's parents to work out whatever issues we might have had because it's not his fault.

16:03And with an autistic child, your parents... Danson acknowledged three people in the whole world. My ex-husband, myself, and my mom. No one else did he even notice. So if you remove one of those three people from his life, it's just not fair to him. And so we have joint custody and we work together and love him. And we have family meetings every week about dancing. And you've since remarried. Yes, I have. And how does your... I see you must be nice. That's fine. And how does your new husband adjust to an autistic child in the home? My husband, Michael, is an angel in my life. because I did this basically as a single mom for three years, although I had the weekends off, which is a luxury that most people don't.

16:49Still, I homeschooled Danson. I was with Danson 20 hours a day. Weekends off because he was with his father? Yes. And my husband, Michael, came in and made this choice to love us and to be with us, and he's a calming force in Danson's life. Danson kicks me out of the room when Michael gets home from work, and the two of them just connect. So he is connected. Yes. able to connect with him. Yes. That's a special man that can do that. Yes. Well, Dr. Anshabatra is a pediatrician who focuses on autism, and two of her sons are autistic. Now, can you help us understand what this is? You would know having two sons.

17:28Yes, I do know. Well, autism is a developmental disorder that is characterized by deficits in three main areas of a child's development. A delay in language. Delay in language. Impairment in social interaction. So you can't really connect with other people. Right. And repetitive or odd behaviors. Yeah. And that's how you define autism. David, wanna play catch? Andrew and David are only a year and a half apart, but in many ways these two brothers are strangers. David. Good boy. His brain is just messed up, and I feel so bad for him. I wish I could go into his body and see what's wrong with him.

18:10Like, how does it feel to be him? Ten-year-old David's autism is heartbreaking for his older brother. The hardest part is just being lonely. I wish I had someone to play with. He's come home and said, it's not fair. None of my friends have a brother like David. This sucks. I hate it. Sometimes I feel guilty when I'm mean to him. If he's annoying me and I'm just, like, screaming at him, I feel really bad. I feel like it's my fault. Even in this home filled with love, 11-year-old Andrew sometimes feels left out. I just think that he should give me some attention too. David, do you want to rollerblade in a minute?

18:50He gets all the attention every day, every second of my life. So like, I'm just off in my own world. On good days, we think we've done a really good job given a really tough situation. But on the other hand... I wish he was doing this as a trick, like, is he really normal?

19:15It was just all, like, just a joke. It was all just a big dream. Andrew is here with his parents, Diane and Scott, and so did you know that this is how Andrew felt? Yeah. You know, it hurts. It hurts as a mom very badly. I think it's hard. It's hard to be parents of a child with autism. And it's just as hard, maybe even harder, to be a sibling. Mm-hmm. I think... Because you don't have that buddy. Yeah. And I think harder to be a sibling because you have nothing to compare it to. And as Andrew said to you when he came home, you're in school and other kids don't have it. And so much of your childhood is about comparing yourself and, you know, against what other people think of you.

20:01And so are you embarrassed by your brother, Andrew? Sometimes when my friend come over and he does something really embarrassing, it kind of makes me feel like, why does it happen to me? And it makes me feel like I'm just different from everybody else in my family. I'm, like, trapped inside my own world, like David is. And so when did you... How old were you when you realized that he was different than you? Well, I didn't know what it was when I was really young, so probably when I turned, like, five or something, I saw him doing weird stuff, and I was like, what is this? What's happening to him?

20:37Uh-huh. And how did your parents explain it to you? They said he... My mom, I remember one day, said to me, you see those wires in the back of the TV? Well, they're all put together, but David's brain isn't. And I said, wow. Yeah. And so sometimes you feel sad for him, I'm sure. I feel really bad for him, because he just doesn't know how to feel. He doesn't know what he wants. He can't talk to us. Mm-hmm. Has he ever spoken to you? He can talk. He can tell us what he wants. He can say how old he is. He can say his name. He can say my name, but that's mostly it. Mm-hmm. What do you most... what do you most want people to know about your brother?

21:17What I want people to know is that he's not dumb, but he is really smart in his own way. He can swim really good. He can rollerblade as well as I can. He can do so much things, and he's really lovable. He loves to be with his family, and that's probably the best thing about him. Is that he loves to be with his family. But I can imagine, Scott, that what Andrew was saying, every parent who's dealing with this on one level or another understands that, you know, if you have a child who needs special attention, that child can suck all the attention away from everybody else. Absolutely. It's a very difficult balancing act, and it's something we've tried to manage as best we can.

22:00There's really no right or wrong with this. And, you know, we've made it our effort always to give Andrew what he needs and try to be with him as much as he can. But at the same time, we know David requires so much attention because of his deficit. So it's a constant balancing act, and there's a lot of guilt involved in it, and we just do the best we can. You sometimes, did I read, is this your family, you sometimes vacation without him? Go away sometimes without him because everybody needs a break? Yeah. You know, vacations are hard. I think, for every family with autism. I don't know if there's really any vacation.

22:34Even if you leave, if we... If Scott and I go away, which is not that frequently on our own, the planning that's involved just to leave all the other kids home is enormous. And about two years ago, we started taking one or two trips a year without David. And it's very bittersweet. But it's something that we have to do. We need it, and I think both our other kids need it. And it's a good time for us to spend that quality time where we're not distracted by David. You know, his eating habits are difficult. I don't know how he's going to behave on an airplane or in a hotel room and wake us all up because his sleeping habits are bad.

23:12There's just so many what-ifs. Yeah. So... Well, thank you, Andrew, for helping us understand. Everybody wants to know, where does this come from? What is it? You know, no one knows. It's still very unclear. As I was saying, that's a$64 million question. Yeah. But now the medical community and scientists feel that most likely there's definitely a genetic predisposition. So these children are predisposed, because of that genetic salt shaker, for mom and dad, that they have a genetic predisposition. So does everybody agree that it's some genetic component? Yeah, definitely. That's... Everybody agrees.

23:56Yeah. And then the other things people don't agree. And then there's something else. The...the...what we don't know is that environmental trigger. What is it? Whether it's infections, some virus, trauma at birth, we don't know. And that's what now... I've heard vaccines. Vax...yeah, there's some...there's some controversy. Yeah, I know. Lots of controversy. I'm just saying it, though. Yeah. But...but...clearly, the...the vaccine question has been pretty much refuted. that vaccines are not linked to the rise in autism. Yeah, but I think that what was said at the beginning of the show that's actually on one of the tapes is that it's bigger than breast cancer and...

24:37Bigger than breast cancer. Bigger than AIDS. Bigger than childhood leukemia. Bigger than that. Bigger than diabetes. And nobody's paying attention to it. Or it seems as though nobody's paying attention to it. I mean, in all these years, I've been on since 1785, And this is the first time I've done a show about it. So today we're shedding, or at least trying to shed some light on this often misunderstood disorder. And then there's always the parents who just say, can't you just, can't you just keep your child quiet? People have no idea what it's like to have a child with autism. The constant comments, he's too old for that, he shouldn't be having that.

25:21Control your child or why is she screaming? Why is he hitting himself? Why is he biting and pinching? What are you doing to her? Why are you making her cry? And I say, well, you know, are you an expert in autism? But I get a look like, you can't control him. One day, I have to always have eyes in the back of my head. Where is my son? What is he doing? Either what is he knocking off the shelf or what is he putting in his mouth or which stranger is he inappropriately touching? When Jody was on the swings and crying, the other moms were sort of looking and wondering why this eight-and-a-half-year-old girl was screaming and carrying on because she didn't want to get on a swing.